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Failed cancer data integration project means labs can't see patient histories

Serious Questions

“Without a register function, there will be no national system in place to provide screening histories to laboratories to inform clinical decision-making and no safety net supporting women with positive test results to get the follow-up they need”.

1. Why is this a Commonwealth function ?

2. How many people move interstate once they have had a cancer diagnosis that would be used to justify a commonwealth register >

The Commonwealth also funds the Bowel Cancer screening program. Only 37% of people offered a free test bother to do it. I am one of the 63% over 50s who don't as the test is already included in battery of tests I undergo each year (I have had abnormal liver results (genetic) since age 20 and the quack wants to keep an eye on it - so about a liter** of blood drawn every six months - every 2nd one a PSA and the "off" PSA is the bowel) and the 2016 report summary is a mass of gobblegook.

** may or may not be an exaggeration

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Re: Serious Questions

But do you have a My Health Record? Then the government would know everything about you and could use it against you if you criticise them - just like Centrelink did with/to Andie Fox.

And the same question should be asked of My Health Record - "Why is this a Commonwealth function?" GPs already have health record systems, why should the Federal Government run a system whose only function seems to be to link with other data. If only they could get people to use it. Oh, wait, they're about to make it opt-out.

94% of My Health Records have no shared health summary making them pretty useless.

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Re: Serious Questions

The states and territories already have their own registries, but these are not integrated with one another.

There are people whose cancer diagnosis turns up in a registry without there being any prior record of hospital admissions. This may be because they moved to a new state, then got diagnosed with cancer for the first time in that state. So the only record about that person's cancer in that state will be that they were diagnosed on a certain date with a certain type of cancer. not very helpful without their medical history. It can also happen when Aboriginal people from central Australia go to a hospital in another state and there are no records for that person in that state, so all a cancer researcher has is a record of a cancer diagnosis. Cancer outcomes for Aboriginal people are much poorer than those for non Aboriginal people and nobody yet knows why, so more complete records for them would make understanding the reasons for their poorer outcomes easier.

Cancer research projects on a national scale are much easier if there is only one body with whom to negotiate access to the data. South Australia is notoriously difficult to do any kind of health research in, so researchers in this area will find it a bit easier with one less set of hurdles to jump. I know a very eminent researcher who has spent several years trying to get access to data for one particular project because of that. A national register would make cancer research more about doing research and less about fighting foot-dragging of bureaucrats who just can't be bothered.

So, while it's not an obvious Commonwealth responsibility (since they don't run the hospitals and states do), there are good reasons for creating a national registry.

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Yet something tells me they will still be collecting their full payment, despite not actually delivering.

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Silver badge

Worse, Oliver.

They are going to charge you to fix their mistakes.

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Bronze badge
WTF?

“Without a register function, there will be no national system in place to provide screening histories to laboratories to inform clinical decision-making and no safety net supporting women with positive test results to get the follow-up they need”.

Isn't that your doctor's job?

Sample goes to lab to perform tests specified by your GP.

Results of those tests come back to your GP. Your GP asses the results with respect to your medical history.

Why does the laboratory require anything other than the sample and the GP's specified tests?

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I guess the alternative is that upon referral the GP will have to write a letter with the results which will be manually transcribed into a computer.

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Damn Aussies

They just can't stand for the US to be the #1 cock ups.

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It should be a Commonwealth function and laboratories need access to screening histories in order to provide assessment. Many of these comments are ill-informed and ignorant of how cervical cancer and abnormalities are screened, detected, and why screening histories are critical. A central Registry means young women who travel and live in different cities and change gps as often as they their underwear can have their test results kept in one place, accessible by health providers and pathologies the next time they are tested and need their sample screened and their care plan put in place. There are many pathologies that screen samples. They need previous results to make a better assessment of a current test and assist the doctor in follow up plan.

The problem is not that it's becoming a Commonwealth function. The problem is that it's going to a private for profit company known for its data collection and mining. The other problem is that Telstra are not equipped or experienced to run a national health registry of such importance.

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